Hopeful Hearts

A long overdue blog update! So much happens in a day, week, month in our world, it's hard to keep up or to know where to start!! There have been some ups and downs in Shirley-Dale's treatment, but also a lot of fun and adventure throughout the summer and fall. Here is a brief recap:

Since returning from Sweden SD started on the new drug Sutent along with the drug Avastin (which she was already taking) as recommended by the oncologist in Sweden. It started off okay, but the dose was too high and she was experiencing some major side effects. They eventually had to reduce the dose and change the treatment schedule so her body could handle it. In September she had a CT Scan to see if the drug was working and the scan showed mixed results. Part of the cancer (in the liver and omentum) receded, but multiple new lesions showed up in her lungs. They kept her on the treatment for another three cycles to assess whether or not the drug was working or if the new lesions had happened in the summer when she had to go off treatment due to the side effects. Two weeks ago she had the follow-up CT Scan which showed that the Sutent was no longer working and the cancer had progressed in the lungs and the liver. The oncologist was grim at first, but after Mom and I convinced him that he was not done with us yet and couldn't get rid of us that easily, he couldn't help but smile and agree that there was hope. Mom and I got a copy of the CT Scan report and took a yellow highlighter to highlight all of the positive points in the report. There was a lot more yellow than white. In our opinion, even though the cancer had grown, it had only grown by milimetres which means that the treatment had at least slowed the progression of the cancer. The oncologist here and the one in Sweden both recommended a new drug called Afinitor which is just new on the market and shows promising results, especially for people who no longer respond to Sutent. The biggest challenge with the new drug is that it is so new on the market that her health insurance is refusing to cover it. It only costs $7,000/month, no biggie! Thankfully Rob and Tom had an emergency fund set aside which covered the first month and we are now in the process of appealing the decision. The cancer and the insurance company don't know who they are messing with!!

Although the news was not as great as we had hoped, we are still strong and convinced Shirley-Dale will beat this cancer. In some ways, we have even shifted to the idea that there is a way that she can even live with the cancer, as long as we can keep it from progressing.  The key is in the attitude. Our approach is that we are not going to let this cancer dominate our lives. Despite the challenges over the last 8 months, SheDae still managed to have a great summer and fall, kayaking down the river, playing with the grandkids, traveling, writing and a million other adventures. Cancer only occupies about 3% of her body, so why should we let it occupy more than 3% of our minds? The news was enough to get our backs up and ready to face the latest challenge and to take on this new fight. We are reminded of the song Hopeful Hearts by Sarah Slean:

So we take the path not taken
Down into the fields of war
Sword alone, the shield forsaken
This the right we're fighting for

Hopeful hearts are moving targets
I don't know how I survive
We go out like birthday candles
Then like suns we rise, we rise

 

So, like suns we too will rise. Please send all your positive energy towards SD. Every little bit helps. We will get this cancer and will someday all look back and laugh about the whole experience. We wish you all a  wonderful Christmas and a Happy, Healthy New Year. As always, we are forever grateful for all of your love and support!! We are blessed.
Love Julie and Shirley-Dale

Greetings from Sweden!!

Well, thanks to an amazing send-off and some incredible fundraising efforts by neighbours, friends and family, we made it to Sweden!!  Mom and I arrived at Rob and Lisa's last Thursday and were joined by Tom, Bonnie (Mom's sister) and my cousin Lisa on Friday. Once more it was a whirlwind Easter weekend in Runtorp, complete with good food, chocolate, lots of laughs, trampolines, village parties, Easter witches, egg hunts, lots of skåls (cheers), long walks and tons of fun time with Joel and Astrid. On Monday Lisa headed back home to Canada and the rest of us headed out on our big adventure to Uppsala to meet with the world expert in neuroendocrine tumours. Uppsala is a beautiful old city about an hour north of Stockholm. The hospital here is over 400 years old and is tucked away at the base of a 16th century castle.

On Tuesday Mom underwent a series of tests and today Rob, Tom, Mom and I met with Dr. Öberg the endocrine oncologist, head of the Centre of Excellence for Neuroendocrine Oncology. They have been doing research at this centre for decades and Dr. Öberg told us that he has treated over two thousand patients from 118 different countries with Mom's type of cancer. Once again, we all had to hold back from hugging him, just for all of the kindness and support he has extended to us already. He has a kind face with a twinkle in his eyes. He sat with us for an hour answering every question and giving us lots of options and encouragement.

So here is the news:
First of all, the lesions in the liver have reduced since January. There are only five visible on the scan (down from 'too many to count' in July according to the radiologist), and all of them are under 1cm in size. It appears that the Avastin is not only stabilizing the disease but is also helping to attack the cancer cells in the liver. Great news!

The second bit of news is that no new lesions have developed anywhere in Mom's body, which is great, however, there are still two masses in the omentum which have grown since January. They are located on the outside of the large bowel (not in the bowel) and appear to have caked together in clusters. When asked to describe the tumours, he told us to visualize them as little clouds. He then drew a picture for us of the exact location of these 'clouds' and gave us a detailed game plan to take back to Canada.

Although we were a bit disappointed to hear that the cancer had grown in the omentum, we were really happy to hear that it had reduced in the liver and that Dr. Öberg has lots of options. He still feels that we can get this cancer and gave us examples of others who have beaten it. He was amazed at how healthy Mom is and told her to keep up with all of the things she is doing to keep her body strong. He suggested a couple of new drugs that are on the market now (one which is available in Canada) that have shown very promising results and are well tolerated, especially when used in combination with Avastin. He also gave us a number of other options to consider if needed down the road. We just have to keep outsmarting it. 

So, we may still be climbing this hill for awhile, but we are as determined as ever to make it to the summit. Tonight as we head out to dinner on our last night in Uppsala, we are filled with thoughts of gratitude, not only for the hope we received today and the feeling that someone believes in our cause, but also for the love and support from all of you who have helped us get to this point.

Med vänlig hälsning,

Julie, Rob, Tom, Shirley-Dale and Bonnie

Good Times and Gratitude

Some people's lives are doled out in teaspoons...orderly, civilized, manageable.Our lives are poured out in buckets, in cloudbursts, in tidal waves...dramatic, unpredictable, overwhelming. We put out a call for help and it was as if someone opened a dam and people from all parts of our lives came flooding through the gates with a tremendous surge of love and support.

There are no words. There is no real way to express the gratitude we feel for the outpouring of generosity that came our way in the last few weeks, not to mention the past three and a half years. Our hearts are full.

On February 5th our house was overflowing with people, with music, with love and laughter.  The afternoon House Concert got underway at 2 pm with lots of children present, peacefully playing around as they listened to the music, getting a chance to try some instruments at the end. The second concert began at 7:30 with 68 guests seated around our living room on couches, chairs and cushions on the floor.  Joel, Tom, Betty and Bill were phenomenal, playing and belting out songs, bringing the audience to a standing ovation. There was dessert and wine and just plain happiness all around. The donation jug was overflowing and the means to get to Sweden for medical treatment is now within reach. Thank you, thank you, thank you to everyone who was here or who donated by email, by PayPal or sent money and cheques. And thank you Betty, Bill, Tom and Joel for the fantastic concert. 

 

Just a little update on the state of my health.... yesterday I got the results of my C.T. Scan and found that the cancer has stabilized. Although we were hoping to find it was gone, the doctor was pleased with these results. It seems that stabilization is very rare for this type of cancer and we have done it with the treatment, alternative healers and positive attitudes. I am finished chemo and am still getting a shot of Avastin every two weeks for the next 2-3 months. Avastin targets and blocks the protein/growth factor that makes this type of  cancer multiply so quickly. It is a relatively new drug for Canada and even a newer drug for use in neuroendocrine cancer. Research has been promising for stabilizing and in some cases eradicating the lesions. I am looking forward to having hair again and to getting into top shape before we head to Sweden.

Once more thank you everyone for everything!!!!
We are truly blessed!!!!

House Concert Fundraiser!!

We would like to cordially and humbly invite you to a house concert at our place to help raise funds for Shirley-Dale's consultation/evaluation in Sweden with the world expert  for her type of rare cancer. The Centre of Excellence in Endocrine Oncology is located in beautiful Uppsala, Sweden which is about an hour north of Stockholm. The teaching hospital there has been conducting medical research for over 400 years! Dr. Oberg has been co-directing She-Dae's treatment plan for the past two years and has requested that she  return to their centre for a thorough evaluation at the end of April. We thought a series of house concerts would be a perfect way to raise the money needed  for the consultation and medical tests, not to mention a whole lot of fun for everyone!

For those of you who have been to our house, you know that it was made for music. This first house concert will feature East Coast Music Award winner and legendary musician Bill Stevenson; multiple award winning bassist Tom Easley; multiple award winning guitarist Joel LeBlanc; and one of the East Coast’s best talents Betty Belmore.


DATE: Saturday, February 5th, 2011 


TIME: Matinee kitchen party 2pm-4pm (children welcome!)
              Evening Performance 7:30-10pm (dessert party)


ADMISSION: Suggested minimum donation $20   

LOCATION:  18 Kentville  Road, Durham Bridge (Directions supplied upon request)

RESERVATIONS:  Phone: (506) 453-0001 or Email: deasley@nbnet.nb.ca 
                                     (space limited to 40 so be sure to reserve a spot!)                   

                             

DONATIONS:  Can’t make it but still want to help?

We have set up a donate button on our blog (on the top right) if you would like to make a donation using a credit card or a Paypal account.  You can also send an e-mail money transfer directly to Shirley-Dale at the e-mail address listed above. If you prefer to write a cheque, you can send it to: 
Shirley-Dale Easley
18 Kentville Road
Durham Bridge, NB
E6C 1K6

As always, we feel truly blessed for all of the continued support that we have received on so many levels. We can`t thank you enough.
Much love,
She-Dae, Jules, Rob and Tom



ARTIST PROFILES

Bill Stevenson

In over forty years as a musician Bill has recorded for Elektra records while still in his teens, opened for the Doors, backed up John Lee Hooker, put performing and recording bands behind some of Canada’s best loved musicians including Amos Garrett, Colleen Peterson and Linda Carvery. He has hosted his own National radio series for CBC. He has been a contributing side man to multi award winning albums by Garrett Mason, Thom Swift ,Hot Toddy ,and now includes his own win with a 2008 ECMA for best Jazz Album. His participation in the Jazz/Blues idiom has earned him a respected place in the national music spectrum.

Tom Easley

Tom has earned a reputation as one of Eastern Canada’s first-call bassists.  Throughout his successful career as a performer and session musician he has played with many of the top jazz, blues and folk acts.  Tom co-leads the ECMA winning group, Hot Toddy Trio, with whom he has co-produced and released seven CD’s. With Hot Toddy, Tom has performed at most major jazz and blues festivals across Canada, Europe and the United States. Tom received the 2007 ECMA for Jazz Recording of the Year and has been nominated three times for Bass Player of the Year by Toronto’s Maple Blues Society.  He has a Music Degree from St. FX in Honours Jazz Performance and holds a faculty position at NSCC’s Music Arts Program.

Joel LeBlanc

Multi instrumentalist and composer, Joel LeBlanc has toured throughout Canada and Europe over the last 12 years. A founding member of the east coast roots/jazz trio, Hot Toddy, he performed at major international festivals in the blues, jazz and folk idioms respectively and opened for luminaries such as Bill Frisell and Dolly Parton. With Hot Toddy he released 9 albums, won two Dutchy Mason Awards, a 2006 Maple Blues Award, and a 2005 East Coast Music Award. Currently, Joel performs and composes for jazz and improvising ensembles and film. In 2009/10 Hopewell screened at the Portobello Film Festival (London, UK), the Global Film Festival (Indore, India) and The Great River Film Festival (Denison, Ohio). Joel released 3 recordings in 2010; The Joel LeBlanc Quartet, Resurgo! and Paneo for Sale.

Betty Belmore

Betty was born into a large and musical family in Caribou Gold Mines, Nova Scotia where singing with her five sisters was intertwined with work and play. While attending the University of Kings College in Halifax she soon found herself in demand in Maritime coffeehouses and so began her pursuit of roots music. In a career spanning some 40 years she has learned from and performed with a lengthy list of singers, songwriters and musicians and has earned respect for her own contributions to the music industry. Betty is particularly known for her ear in harmony singing and reviving rare, old songs from the roots of early country, blues and old-time music of North America. She has co-produced two of her own CDs The Harvest is Ready 1997and A Song in the Air 2002 released independently to critical acclaim. In 2002 she produced In the Pink, a collection of old songs sung by her, then octogenarian, mother and aunt, Dolly Belmore and Bobbie Annand.  As a back-up singer and vocal arranger, Betty has appeared on numerous radio and TV shows and recordings including performances with Jesse Winchester, Gene MacLellan, Stan Rogers, Sylvia Tyson, Denny Doherty, Peter Rowan, Flaco Jiminez and Bill Monroe. As a songwriter, she has had her songs recorded and performed by Clary Croft, Theresa Malenfant, Denny Doherty and Marg Osborne.  Betty Belmore  performs with Gordon Stobbe and The Mighty Oak String Band, The Bill Stevenson Band and occasionally with The Belmore Sisters.

100 chemos

Yesterday was Mom's 100th chemo. One hundred chemotherapy sessions. One HUNDRED. Seriously. Definitely a milestone that few strive for, but one of epic proportions. One hundred days of treatment. My own voice echoed through the halls of the Oncology Unit  as I bragged of this milestone to all who made eye contact with me, manifesting my own cliche..."100 chemos!!! I don't know what she is made of!!" I really don't. Each chemo I've been amazed at how her body rebounds, how her spirit soars to spite the cancer, and how her focus is steady on the goal to live. One hundred chemos.

For most people the notion of 100 chemos conjures up images of sickness and frailty, but in this case it couldn't be further from the truth. Not that there aren't rough days and struggles, but I can honestly say that I have never seen such resilience, such strength and such determination as I have in Mom. She has taken on the task of living as her full-time job. It is always so pleasing to me after the first few ragged days of chemo to hear her humming down in the kitchen in the morning while she digs around for a new project to start.

Rob and SD in Uppsala, Sweden

Tom and She-Dae

So what does 100 chemos in three and a half years look like? It looks like a wild toboggan ride down an ice-glazed hill with her son Tom. It looks like four trips to Sweden, a journey into the Himalayan Kingdom of Bhutan, and a pilgrimage across Northern Spain along the Camino trail. It looks like laughing for hours on the phone with her son Rob in Sweden and pep talks from her brother Rod in Pennsylvania.  It looks like crossword puzzles by the woodstove and singing all night with her sisters in the back kitchen in Caribou.It looks like a moonlight canoe ride down the Nashwaak and sleeping outside in the gazebo by the brook. It looks like a cup of tea in the sunroom and a crock of baked beans on a Saturday night. It looks like handstands on the beach and reading bedtime stories to her grandkids Clara, Astrid, Joel and Ellie. It looks like guide books, travel brochures and notes strewn across the table plotting the next big sojourns to Sweden, England, Switzerland and Mongolia.

She-Dae, Astrid and Clara, Cap Pele, NB

One hundred days of chemo. Imagine.

There is no better way to learn about the value of life than to spend time with someone who is fighting for it. I feel honoured to be along for the ride.

The Roads Less Traveled

Well, apparently we didn't have enough drama going on. We were only getting ready for my 97th chemo session, trying to coordinate two oncologists to talk with an ocean and a five-hour time difference between them, waiting for clearance of the new drug Avastin which could be the key to saving my life, trying to find ways to pay for this miracle drug, not to mention getting around to all my healers to help strengthen my body before I head back into action. Oh yeah, and then there's Christmas. But no, we had kick it up a notch.

On Wednesday last week we visited Dr. Raza knowing we needed a miracle. He had called Dr. Öberg in Sweden and they had made the plan. I would do three more rounds of chemo with Avastin which he agreed to prescribe as long as we pay for it. Luckily, my insurance company will cover 80% of the cost. We then went to see the oncology social worker to ask if there was any way to get help with the remaining 20%. She said they hadn't dealt with this drug in this way before because I am probably the first one in Canada using it for this kind of cancer. She told us the drug rep was in the hospital that day and she would try to see him. Then the miracle happened. She opened her door and he was standing there. In less than a minute she came back in and said, "Yes, the drug company will pick up the remaining cost". It saves us over $8000 a month.

So, we were all set. On Tuesday I would go in for bloodwork and start the sessions on Wednesday. It was Monday when the rain started falling from the sky in sheets, relentlessly. We walked down our driveway at midnight with a flashlight and saw that the end of it was nothing but a gaping hole. Water was shooting up out of the culvert and the whole Kentville Road was a lake of swirling water. All night the storm raged with thunder and lightning and trees swaying to the ground. In the morning we found out that the Nashwaak River and all surrounding streams had overflowed in a flash flood, blocking the main highway on either side of us and washing out roadways. 

We were stranded and desperately trying to think of a way to get out when Fred and Connie walked in the door. They had come to rescue us. Parking their truck on an old logging road, they had hiked through the woods along the ridge of the valley and then beat a path down to our house through the thickets. (They are jungle trained!)

We packed a backpack and headed out with them uphill, over brush piles, through raspberry bushes,  and across the torrents of water pouring off the hill, guessing most of the way, until we hit the woods road and the truck. Fred managed to drive out over fallen trees and rushing brooks, coming out into the sandpit above the flood waters. From there we took back roads to Stanley and down the Royal Road to Fredericton. You can always, always count on Fred and Connie to solve any problem and tackle anything. By 4 p.m.. I had had my blood work, we had picked up my anti-nausea drugs for the next day and were settled in the Crown Plaza for the night. We even had a little party in our room when Caroline, Bessie, Sylvia and Lisa came over with home-made pizza and drinks.  


It is now Saturday morning and I finished the first round of this treatment regime. The sun is beaming in the windows, a light snow has fallen in the night, the cat is asleep in front of the wood stove and the waters have receded as if the flood never happened. We are truly grateful for all the pathways that opened for us this past week, both figuratively and literally. All is well.

The Waiting Game

How much of our lives are made up of waiting? Waiting for a letter, waiting for someone to call, waiting for the kettle to boil, waiting in line-ups at banks or supermarkets, waiting for summer, for birthdays, for someone in your family to come home. It is Sunday night and a warm December rain is hitting the windows. Julie is playing the piano and singing while we wait again, wait for tomorrow when we will hear what the doctor has to say about my further treatment. Last week, in the 'waiting' room of the hospital, what did we do? We waited for the new oncologist to appear and beckon us into his office for my latest CT Scan report. I'm pretty sure we bullied the last oncologist out with our persistent positivity and proactive approach.

As it happened, the report was quite good with the cancer in the liver completely gone, the lungs clear, blood levels almost normal and all systems in top form. However, there is still some cancer caking in the omentum and it appears to have grown while it was reducing in all other areas. The oncologist said he was unsure where to go from here because most people don't live this long with this type of cancer and he has never had to go to plan B, let alone Plan C, D and E. He said it in a complementary way, such as, you have already beat the odds. Julie once more got on the warpath, researching, e-mailing, calling and borderline-stalking physicians for action. She contacted Dr.Öberg at the Centre for Excellence in Endocrine Cancer in Uppsala, Sweden. Dr. Öberg is on our team as we were there in the spring for testing and consultation. He suggested a regime that would have me on three more cycles of the chemo that I just finished along with the drug, Avastin. Now, Avastin comes with its own challenges, too lengthy to describe here, but none we can't conquer. My oncologist will take the advice of Dr. Öberg. Hopefully the two oncologists will talk tomorrow and make a plan for me, so we are waiting. Waiting, waiting waiting.

So, what do you do when you are waiting for something that could mean your life? Well, you go tobogganing. That's right, tobogganing. Take that cancer!!!! You make bread and a crock of beans. You pace. You pour a glass of wine. You flit from task to task, accomplishing nothing. You pour a bath that is too hot and get right out again. You do mundane things as if they are the most important tasks in the world. (Julie vacuumed the woodpile with the new shop vac). You talk to your sons on the phone for hours. You take calls from family and friends who reassure you. You pour more wine. You call up your healing gurus and make appointments...acupuncture, reiki, reflexology, energy healing, therapeutic massage, qi gong classes, meditation. You go for drives on old country roads that have no end. You wake up in the middle of the night and look out at the stars, knowing everything will be alright.

And so we wait.